The Great Recovery! After cancer what next?

[TopOfTheCliff]

This thread was suggested on the general Cancer Thread
https://www.mumsnet.com/talk/general_health/4895824-cancer-support-thread-90-still-the-best-threads-no-one-wants-to-be-on?page=15&reply=129923637 as a place to come when you are recovering.

You may feel your treatment is over and you are cured or at least NED, or it may just be a lull between storms, but you want to step away from the daily grind of chemo and radiotherapy and look to the future.
Most of us come out the far side of a cancer diagnosis battered and unfit and probably overweight from the steroids and the comfort eating. Where do you start? How long will it take ? Should you diet to lose weight or try to exercise more? Then there is the huge mental hurdle of putting Cancer behind you and not worrying about recurrence with every twinge.
I am a veteran of the Cancer Thread having had breast cancer twice in two years and I managed the recovery after cancer no 1. Now I have to do it all again but in good company I hope.

@SierraSapphire I hope you escape soon. I got my SIL to smuggle me decent coffee and cake in from the hospital cafe as she works in admin there.

Have a bracing time @myrosehasleftme is it very wild and windy? We have rain and a fabulous rainbow here.
View from Top of the Cliff

@TopOfTheCliff that's beautiful, it veers between bright sunshine and huge downs pours here but it's nice to be away, no work and being looked after by family. Bit self conscious of my nose though.

Thanks Top, I paid to have it done privately - I was eligible on the NHS but I would have been on a waiting list and possibly never come to the top - and no hospital cafe nor anything decent nearby (DD did have a walk around Tesco Extra) but we stopped for coffee on the way home (probably inadvisable!) and now actually back and on the sofa. First time DD has come with me to anything (she's 20) but as she's a student nurse it was great to have her there!

I thought I would wade in with my experience of recovery . I'm 53 diagnosed with stage 4 fallopian tube cancer in 2020. I had 6 rounds of carbo and pax and surgery. I then had 18 maintenance rounds of avastin.
I had a reoccurrence Nov 22 and that was treated with Caylex and Carbo. That ended in April 23 and I'm now taking Niraparib which I will be on for as long as it works or becomes to toxic in my bloodstream.
My experience of recovery was very different the first time round I found recovery the second time much easier.
My main advice is take it slowly I found it really strange when treatment ended and I was left with a 'what now' feeling. After months of sitting on the sofa I joined a couch to 5k group which saved my life. I found a new love of running and made some lovely new friends. Just being outdoors and feeling the sun on my face helps me a lot.
I had to aims to' make it' for, to see my son go to secondary school (he starts Sept 24) and to finally win the fight for him to be given the opportunity of growth hormone . Which he will start in a couple of weeks so I need new targets!
During recovery Be kind to yourself and listen to your body .
Pic of Port Eynon on the Gower

Loving the beautiful views! There have been a few times through this journey where I've found just looking at nature's beauty really soothing. It's made me determined to get out to coast and countryside more and just take a moment to sit and be.

First oestrogen patch is on, let's see if this helps with the insomnia!

I'm having a feeling wrung out day today. Going to go for a gentle swim later and see if that jollies me out of it. Even if I don't manage to do X amount of lengths there's something about being in the water that makes me feel better. Plus I know that the feeling will pass and I will no doubt feel better tomorrow or the day after. Just the ups and downs of life in general and particularly life after treatment.

Can very much relate to the 'what next' feeling too.

@TopOfTheCliff a view from the top of cliff at a sunny moment (if I actually managed to attach it!). Agree about a good walk/ run outside being good for the soul.

Went to fireworks tonight.

@Silkiebunny what amazing pictures!

@myrosehasleftme that looks a bit like Sussex or Dorset from my extensive knowledge of UK cliffs. Very nice!

@Silkiebunny that is fab. As our resident firework expert du jour do you think there will be more displays next Saturday or on Sunday as it’s the 5th? We usually invite friends to watch from the Top of the Cliff with drinks and a buffet and I can’t decide which will be best.

I am now ensconced in utter luxury on my cancer retreat. I have the best room with Princess and the Pea four poster bed and another room that has a claw foot roll top bath. It’s stunning! The people seem lovely and we have three psychotherapists to guide us. The food has been amazing vegan and yummy. We are meant to be detoxing from SM so I may have to go undercover to report. Wow! It has exceeded my expectations

@TopOfTheCliff - yes Dorset, by old Harry's rocks, well recognised.
Enjoy your retreat, I hope it gives you a good mental boost, that bath and bed also look amazing.

Wow @TopOfTheCliff that looks great. Also love the idea of York Christmas markets. I visited York last time I was back with uni friends, it was great! I loved it!

I’m still dealing with a bit of a slump. The sinus infection is lingering with additional seasonal allergies just to make me feel extra crap. Think the immunotherapy drugs are making me tired too.

Both friends here are sick, one has terrible asthma and a chest infection and the other has just had a small precancerous lump removed and so isn’t feeling that sociable either. My husband is desperately excited for a fancy dress party with lots of younger cos-players this evening. It’s over an hours drive away, I can’t drink, I feel unwell. Plus I have a CT scan and day surgery to remove the anglio filter thing they put in to prevent further blood clots/PES etc. So I’ve got low level stress about that, I think they go in through a vein near my neck so I’m worried.

I love my husband but he stresses me out. This morning once again he emptied the dishwasher decided it wasn’t all clean enough and then left all the washed up stuff to drain all over every surface in the kitchen and didn’t put it away. I think we are growing apart quite rapidly. All of this has aged me. I don’t want to drive for an hour to get drunk with a bunch of people half my age. I think the writing is nearly on the wall.

I’m plotting a return to the UK because I miss my parents, extended family and friends. But I wonder will I be happy anywhere after all of this!

More positively I’m applying for jobs out of education, have passed two more assessments for my Diploma.

What I really need to find is something that makes me feel happy. Or an aim in life that I am working towards.

I worry that if I move back to the UK, I will have a reoccurrence and it will kill me. (But that’s a risk anywhere).

Psychologist referral taking a while, she phoned a week ago and said she would organise an appointment but nothing back yet.

Sorry, this is a bit woe is me. Also yesterday I woke up and trod in cat sick …. 🤣 I think the universe is trying to tell me something, but what could it be?

Words of wisdom would be appreciated. X

Sorry you're not feeling great @FairyWren7 - the fancy dress party with younger people wouldn't be my idea of fun either, particularly if I was feeling ill. Can he go alone? I know you've mentioned coming back to the UK a few times, that seems to be the biggest factor that influences what will happen, would he come with you? It must be difficult with that hanging over you to work out, what else to do. Otherwise your mood is bound to be low if you're feeling grotty, even if you didn't have the psychological crap of cancer to deal with. Be selfish today and do what feels right to you!

@SierraSapphire yes I’ve said he can go without me. It’s the only real solution. And it’s ok. I’m going to get myself a takeaway and watch my shows. Hopefully I will feel more enthusiastic about being sociable at some point.

@FairyWren7 that all sounds a bit crap. You deserve a bit of wallowing in front of the TV with nice snacks.
How does your DH respond to straight talking? Mine gets bawled out about once a year for all his house clutter when I genuinely can’t cope with it a day longer. He is adorable but SO messy. He has taken to seeing it as a positive when I get grouchy as it means I am on the mend and refusing to tolerate things he gets away with when I am too ill to care.
Maybe your irritation is a sign you are getting stronger. Sending peace and love xx

News from the Cancer Retreat is that after a restless night in the princess/pea bed I got up early and had a bath. I nearly got stuck as one of my friends predicted but using some nearby cushions I managed to climb out. Now contemplating breakfast. I do feel calm and pampered but am aware that the Monster in the depths is stirring. It knows it might escape today.
Top

I'm so sorry you've so much on your plate right now fairy.

It sounds like there's a couple of different, maybe separate things - going to U.K. and Dh?

Re Dh it's absolutely ok to not be doing any of the things he likes. I'd have used that for leverage regarding leaving the stuff draining everywhere (apart from anything you don't have the mental or physical energy to deal with extra shit right now)

is it possible to get some counselling for both of you to discuss how to cope? I do remember an ancient woman's hour discussion about navigating I'll health in relationships and how much counselling can help.

I've had to have a very Frank discussion with Dh. He likes to go away to sporting events quite a lot. He's also rubbish in the house. Well, he's not. But due to work and then going out and about it reaches points of "hotel" for him and the sea of laundry and children's crap everywhere is completely invisible.

The other aspect my amazing macmillian counsellor has had me looking at is things like guilt, shame, focusing on "this is what I need right now." Women are more socialised into thinking they should be doing xyz. There's no way I'd have wanted to go to a cos play thing miles away, even when well!

She was great at giving me some advice about communicating to Dh.

In the spirit of "this is what I need right now" I spent most of Thursday in bed bar walking the dog and binge watched interview with a vampire, guilt free. Felt so much better on Friday, enough to spend the whole day out and about wits ds who had a training day.

Congratulations @TopOfTheCliff! Hope the bed lived up to expectations! Have a lovely weekend!

Keep meaning to say to @ClashCityRocker fabulous news for you too. (A week late sorry!)

Also back to say Thankyou so much for your lovely message @Silkiebunny last week. You were so right, I felt a burden, plus perfectionism.

I knew something wasn't right in my arms though and I was right, thyroid hormones have swung a bit too low. The tingling this last week has been awful and I now realise I've been dealing with secondary raynaulds for a few years. Hrt helped a lot, now I can't have that I need to use exercise but also learn about cooling down afterwards as that's been a significant trigger for burning (and it lasts and lasts for days.)

So adjusting meds slightly, new set of arm physio exercises and renewed focus to strengthen everything. But not too much before radiotherapy.

(Hence a day in bed on Thursday!)

Thanks @TopOfTheCliff and @Ikeameatballlunch - I think we’re in a bit of a bubble and it’s nice to hear that other couples have similar issues with the tidying up etc.

It just feels like an extra pressure and it’s not something I’m interested in anyway. But he does stuff for me. He does a lot. I just get a bit frustrated.

Anyway I’ve got my takeaway and I’m happy. He’s gone and he’s happy so that’s ok.

@TopOfTheCliff is the Monster the whole getting over it thing? What you have been through is huge.

I think half of my problem is I’m carrying all the stuff from before. Plus I’m away from my family and a lot of my friends. I’ve also realised that I can’t keep teaching either, not if my energy levels stay like this. So the whole geography of my life is different and needs to be different. I cannot live as I have lived… But I’m so lucky to have the opportunity to keep going and it’s up to me what I do with the time I have.

I hope my counselling referral comes through soon, I’ve got lots to work on :)

Thanks for the support. It’s much appreciated. X

Thanks Top That looks a wonderful retreat. Fireworks next week here vast majority on 4th and local fire brigade very usefully produced a map with links to them all and dates. Its probably worth checking dates of local ones but would say definitely 4th around here is 90% of them.

Thanks IKEA I am also a perfectionist and have had to train myself not to do anger with self when things aren't perfect. I have to approach things with a don't cross your bridges before you come to them as my granny would say, which is like don't worry about tomorrow's problems eg reoccurance and ruin today as they may never happen. I am very what we be will be and enjoy today now.

Thanks Rose. Lovely cliff pics.

Sorry things are difficultFairywren I can understand teaching being difficult, my energy is fine now but I could not face teaching, unless was in a very easy environment. Quite a lot of online teaching here now though not sure how that is for pay. I always half fancied the travel around the world and teach, did it once in my gap year, but think that ship has long passed. 😎Healthcare in the UK is on its knees but cancer is prioritised though if move would raise with GP immediately for a referral.

Hi all, can I join? I have just completed treatment for stage 1 in right breast, stage 0 in left. Masectomy and reconstruction last year, managed to evade radio. I am still on herceptin till feb 24 and tamoxifen for 5 years.

I am struggling with the anxiety of reoccurrence. I have been having slight headaches in the past week and so scared to do anything about it except take Paracetamol which don't seem to help. Did anyone have headaches on tamoxifen?

Just came back to say well done Top! I wish you the very best. I just read that you have completed your treatment. I am keeping my fingers and toes crossed for good results for you.

Welcome Make I didn't have headaches on Tamoxifen. If its a recent thing could just be the time of year, lots of colds going round. Though if persists would raise with GP or BCN.

Thanks Silkie, I will contact GP tomorrow. Fingers crossed is the medication.

That sounds delicious!

@FairyWren7

During cancer treatment is a very difficult time to make such big decisions isn't it, but I can completely understand it triggers those ideas more than ever about returning to the UK where your family and friends live. I'm so sorry you're far away from them exactly when you need them the most xxx

Can you visit the UK for an extended visit eg a couple of months and see how you feel then?